We do not yet have a diagnosis that explains the neurological symptoms.
The C dif is a tummy bug that was already diagnosed but not related to the neuro issues including seizures.
Here are some more updates from Rachel and Matt. If you use Facebook you can get these updates direct by going to the #PrayForPhoebe group.
Rachel in #Pray for Phoebe
[Thu 3rd Aug 9.24 Mobile]
Medically there is no significant change this morning but please continue to pray for Phoebe, she has become very fearful of anyone approaching her, even just the nurses regular checks or moving from the bed to the commode is a huge ordeal filled with near constant screaming and wailing, and her resistance only makes the tasks harder to complete. All parents will know the heartbreak of seeing their child in fear and pain but this is becoming more and more magnified and therefore harder and harder to bear. She is currently being prepped for another EEG as the doctors want to compare her brain activity now that she's on anti-seizure medication with the previous EEG results. So far that has been the worst procedure , and doing it to her again feels like torture. Utterly heart broken.
Matt in #Pray for Phoebe
[Thu 3rd Aug 22.34 Mobile]
The power of prayer!
Just after I posted our last update about Phoebe's seizures/fever asking people to pray, her neurologist, Dr Martens walked in and said he was walking to his car and suddenly felt the urge to come see us and check in before leaving. The timing was perfect because the seizures were very unexpected and it's been over 24hrs since she has had one. He began looking through her notes and spotted the error from the pharmacy relating to her anti-seizure meds and immediately knew that was the reason for the sudden seizures. When I told him people were praying he immediately got goose bumps as he explained how strong his impulse to come see us was. He has put it down to a freak miracle of sorts, I'm definitely putting this down to the Lord's sovereign control and answer to prayer. Rachel and I are so thankful for everyone's prayers. The Lord listens, delights and acts! Big hugs!
Rachel in #PrayForPhoebe
[Friday 4th 11:15 Mobile]
This morning everything looks a lot brighter! Once last night's long seizure was appropriately medicated she had a good night's sleep and has woken seeming much more her usual self than we've seen all week. We've seen a few smiles, heard her laugh, and watched in amazement as she tucked away 3 rashers of bacon and some scrambled eggs washed down with chocolate milk! She's played with bubbles with a physio and has sat on the couch and coloured for a few minutes. She's certainly very weak and has poor hand eye coordination but it's so encouraging to see this significant progress.
We were previously told that the C-diff bug and the seizures were entirely unrelated, but all tests for other infectious diseases have come back negative. So the working diagnosis now is that the C Dif brought on such high fevers that this lowered her threshold for seizures and because of the neurological weakness from the tumour and treatment, she is also more predisposed to seizure activity.
The doctors are also consulting with Phoebe's oncologist in Sheffield who had suggested that this episode could be SMART - Stroke like Migraines After Radiotherapy - as she has seen this in other children with medulloblastoma post-treatment.
As ever we're so thankful for you standing with us in this difficult time!
We were previously told that the C-diff bug and the seizures were entirely unrelated, but all tests for other infectious diseases have come back negative. So the working diagnosis now is that the C Dif brought on such high fevers that this lowered her threshold for seizures and because of the neurological weakness from the tumour and treatment, she is also more predisposed to seizure activity.
The doctors are also consulting with Phoebe's oncologist in Sheffield who had suggested that this episode could be SMART - Stroke like Migraines After Radiotherapy - as she has seen this in other children with medulloblastoma post-treatment.
As ever we're so thankful for you standing with us in this difficult time!
We are so grateful to the Lord for this progress after the horrors of yesterday this is a wondeful turnabout. We pray that it will continue for Phoebe's blessing and God's honour!
Matt has also written the following about Phoebe's brother, Reuben:
I'm proud of this guy. In times like these it's easy to forget how much this all effects him; knowing his sister (and best friend) is sick and being away from his Mum & Dad is hard on him. The lovely thing to see is how he makes the choice to be joyful & thankful even when being sent to stay with others. My prayer is he grows up knowing how deeply loved he is and that he never feels like he got the dregs of our time/attention.
We have been encouraged by the hymn 'He will hold me fast'!
You can listen the hymn on Youtube at: https://www.youtube.com/watch?v=z4tTPDyEtPE
We trust in His hold on us, not on our grasp of Him!
(The time in the UK is 6 hours ahead of the time in Mobile, Alabama)
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